Health Expect. 2022 Dec;25(6):3105-3113.doi: 10.1111/hex.13618. Epub 2022 Sep 26.

Kelly A Matula ¹, Philip Minar ^2 3, Nancy M Daraiseh ^1 3 4, Li Lin ⁴, Marlee Recker ⁵, Ellen A Lipstein ^1 3

Author information

¹James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.

²Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.

³Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA.

⁴Division of Research in Patient Services, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.

⁵Division of Social Services, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.

Abstract

Introduction: This pilot, randomized controlled trial aimed to evaluate the usability, among adolescents and young adults (AYAs) with ulcerative colitis (UC), of a web-based tool ('iBDecide') designed to facilitate shared decision making (SDM).

Methods: AYAs with UC (n = 35) were randomized to intervention (iBDecide, n = 14) and control (n = 12) arms before a scheduled clinic visit. We measured the usability of iBDecide, SDM, preferred decision-making style, decision conflict and intervention use.

Results: Participants in the intervention group found iBDecide easy to use and agreed that it made them feel ready to participate in decision making and that they would use it to prepare for appointments. There were 130 visits to iBDecide, lasting on average 3 min, 41 s. The medication and nutrition trackers were among the most-viewed pages. Pages specifically designed to facilitate SDM were viewed only four times. Across groups, too few participants reported making decisions during clinic visits for decision-related measures to be reported.

Conclusions: This pilot trial provides evidence for the usability of iBDecide and guidance for developing a larger-scale trial of a combined web-based and in-clinic SDM intervention. Overall, iBDecide shows promise in engaging AYAs with UC in SDM and condition management.

Patient or public contribution: Patients, specifically AYAs with UC, and healthcare providers were involved in the design of this study's intervention, iBDecide. Additionally, the research team, from study conception to manuscript writing, included a young adult with inflammatory bowel disease.

Clinical trial registration: This study was registered at clinicaltrials.gov (NCT04207008).